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Issue 6 - November 2017


Welcome to the sixth edition of Thinking Dementia on recent research and policy developments. This newsletter presents a selection of recent journal articles, media reports, NGO reports, university documents and international government reports related to dementia.  Information is arranged by topic, allowing readers to quickly locate areas of interest. 

In this issue:

Featured Article
Getting our heads around dementia in New Zealand
This document prepared by Alzheimers NZ includes key information from the UMR survey of New Zealanders’ knowledge and understanding of dementia, and from the recent Dementia Economic Impact Report.  It includes a short interactive survey where the reader can compare their knowledge with the response of the survey. Source: Alzheimers New Zealand 
Getting our heads around dementia in New Zealand
See also:
Alzheimers New Zealand survey of Awareness and Understanding of dementia
Recent NZ reports
First steps to building a dementia-friendly Rotorua
Since late February 2016, individuals and organisations in Rotorua have been taking the first steps to building a dementia-friendly community.  This report highlights the initial steps, the learnings from these and progress.  The steering group hope the ideas can be useful for other communities.  Source:  Dementia-Friendly Rotorua Steering Group.
Building a dementia-friendly Rotorua
Ageing and the economics of caring
This university working paper addresses the economic and social implications for the care industry of the ageing of the population. The supply of caregivers is unlikely to meet growing future demands.  This under-valuing is partly because of the gendered nature of the work.  In future both paid and unpaid support will require greater economic and social recognition and support.  Source: Retirement Policy and Research Centre (University of Auckland).
Ageing and the economics of caring
Older New Zealanders in care-giving roles
This study included over 330 older caregivers. These included people with high levels of positive outcomes and low depression to those with low levels of outcomes and increased depression.  Reasons for the differences between the groups included the level of social support they received and, to a lesser extent, socio-demographic factors and caregiving experience.  Source: Dementia (executive summary only).
Older New Zealanders in caregiving roles


Updates and Calendar:

Alzheimers NZ 2018 Conference
Auckland, 25-27 October 2018. Stay tuned to our website for more information.

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Full copies of most documents are available online. Sometimes we include information on journal articles or particular interest that aren't available online as full text. For example, where the topic is New Zealand research. These documents are labelled as 'executive summary only'. You may find access to these through libraries - university libraries and DHB libraries are mostly likely to carry most journals we cite.

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The experience and needs of people with dementia

Dementia and the impact of stigma
This Australian online survey of people with dementia, their voluntary carers and the general public explored the challenges that people living with dementia  face and the impact of stigma.  Most respondents (94%) who had had a diagnosis, and 60% of carers, reported having experienced embarrassing situations.  Many reported they struggled with feeling disconnected from others.  Source: Alzheimer’s Australia.
Dementia and the impact of stigma
Living with dementia in a nursing home
This Norwegian study was based on interviews with and observations of people with dementia (PWD) living in a nursing home.  PWD were content but realised this content was based on acceptance of ‘things as they were’.  Informants talked about losing many of the things they regarded as important, such as spending time with family and friends or being able to pursue hobbies; most could recognise both positive and negative aspects of living in a home. Respondents liked to be surrounded by staff they knew well.  Source: BMC Health Services Research.
Living with dementia in a nursing home
Dementia Diaries
Dementia Diaries is an ongoing United Kingdom series of audio diaries of people living with dementia.  The website serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with dementia.  The Diaries aim to prompt dialogue and change attitudes. Source: Dementia Diaries website.
Dementia Diaries
Forget Me Not: Australians living with dementia
This 45 minute ABC television documentary explores the lives of three families living with dementia. It shows how these families are facing their situations with a determination to enjoy life to the full.  The programme explores research into the steps that can be taken to help stave or avoid/slow the progression of the disease. Source: ABC Channel 4 – media.
Forget Me Not: Australian living with dementia
A patient’s experience of dementia
In this article a person with dementia has summarised her experience to assist GPs to understand the experience of patients with dementia.  The report looks at the main aspects of a patient’s relationship with GPs, including seeking a diagnosis and information needs.  Source: Canadian Family Physician.
A patient’s experience of dementia
Talking with people with dementia
This short report discusses verbal forms of communication with people with dementia.  It provides some practical tips on how to help a person with dementia. Source: Social Care Institute for Excellence.
Talking to someone with dementia
Toolkit for engaging with people with dementia and their care partners
This toolkit was developed to assist people in the UK gain information from people with dementia and their carers on the National Dementia Strategy.  It provides advice on gathering feedback through one to one conversations, group discussions and individual surveys; recruiting people for discussion groups; and obtaining consent.  Source: Coproduction of several Alzheimers’ groups.
Toolkit for engaging people with dementia

The experience and support needs of family and friends
Family support for caregiving for people with dementia 
This survey of family caregivers for people with dementia shows that most caregivers agreed that caring for people with Alzheimer’s required many people to help.  However, two thirds felt isolated or alone in their situation.  More than four in five caregivers (84 percent) would have liked more support with caregiving tasks, particularly from their family. Source: Alzheimer’s Association USA.
Family support for caregiving for people with dementia
The impact of Day Care Centers on caregivers
This Norwegian study shows how day care services (DCC) can offer relief and support for family caregivers and increase their ability to meet the needs of the person with dementia on a day-to-day basis. The researchers concluded that a more individualised programme would make DCCs more effective as a respite service, positively influencing the family caregiver’s motivation and ability to care, and postponing the need for nursing home placement. Source: BMC Geriatrics.
The impact of Day Care Centres on caregivers
Day care for people with dementia
This similar study interviewed people with dementia (PWD) and caregivers in Scotland and Norway.  There were strong similarities in both countries.  Satisfaction with services related to meaningful activities, getting out of the home, strengthening social connections and careful staff facilitation of positive and welcoming atmosphere.  Specialist day care services had positive outcomes for both PWD and caregivers. Source: University of Stirling.
Day care for people with dementia
Moving Safely at home
This booklet shows carers how to move people safely at home. It contains tips, techniques and advice. It is designed for informal and formal carers.  Source: Carers NZ and ACC.
Moving safely at home
Retirement on Hold: Supporting older carers
This English report explores the experience of carers who are older (60+) when they become carers. It covers their experience, the issues and needs they face and their knowledge needs.  Its recommendations include the value of a “care co-ordinator” or navigators. Source: Carers Trust.
Supporting Older Carers
Health and social services for people with dementia
GPs providing information on dementia risk reduction
The NHS Health Check is a health check-up provided by GPs for adults aged 40-74 aiming to promote earlier awareness, assessment, and management of the major health risks factors and conditions in England. In 2016/17 the NHS piloted a dementia risk reduction component for 40-64 year olds in four cities.  This study found three quarters of people in midlife would make lifestyle changes now to reduce their risk of developing dementia in future following the intervention. Source: Alzheimer’s Society.
The value of dementia risk reduction information
See also:
Health Check pamphlet on dementia
Evaluation of first four years of Health Check
Rights and the Carer voice
The ‘You Can Make A Difference’ campaign undertaken by Dementia Carer Voices in Scotland was designed to use personal stories to provide health and social care staff and students with a fuller understanding of the carer journey. The report analyses and provides examples of the over 14,000 pledges made by practitioners and students to improve the experiences for carers. Source: Health and Social Care Alliance Scotland.
Rights and the Carer voice
Developing more effective communication between care providers and people with dementia in rest homes
This Canadian study looked at the effectiveness of a communication intervention on residents quality of life using a sample of carers and people with dementia. The intervention included developing individual communication plans, a four hour dementia care workshop and a care provider support system provided by senior nurses. The findings contribute to a growing body of evidence that individualised resident-centered interventions contribute to resident and care provider outcomes. Source: American Journal Alzheimer's Disease and other Dementias.

Improving communication between people with dementia and care home providers
Confident social work for people with dementi
This online resource provides practical guidance, tools and resources to help social workers offer positive and helpful support to people living with dementia. Issues addressed include maintaining a relationship, involving support networks, upholding people's rights and working with ongoing changes. Each section gives evidence and information, including links to useful resources and tools. Case studies and practice guidance draw on evidence from people's lived experiences. Source: Research in Practice for Adults (UK).

This study is based on conclusions of a panel of people with experience with dementia, and "expert witnesses." People with dementia often have increasing experience of different realities and beliefs as their dementia develops. 90% of professional caregivers report using untruths on a regular basis. This study explores how this fits with a professional preference for truth-telling. The panel concluded that, while truth-telling is preferable, there are occasions when a response concludes untruths may be necessary to avoid unnecessary distress. Source: Mental Health Foundation UK.
Confident social work for people with dementia

Truth and lying in Dementia Care

This study is based on conclusions of a panel of people with experience with dementia, and "expert witnesses." People with dementia often have increasing experience of different realities and beliefs as their dementia develops. 90% of professional caregivers report using untruths on a regular basis. This study explores how this fits with a professional preference for truth-telling. The panel concluded that, while truth-telling is preferable, there are occasions when a response concludes untruths may be necessary to avoid unnecessary distress. Source: Mental Health Foundation UK.
Truth and lying in dementia care
See also:
A framework for not telling the truth as a last resort (Journal of Dementia)

Dementia-Friendly intervention in hospitals to improve care for people with dementia
Inpatients with dementia are more likely to have adverse incidents, such as falls or poor nutrition, and to have longer hospital stays. This review explores the effectiveness of dementia-friendly approaches and other interventions for inpatients with dementia. The research describes key principles that are likely to improve the patient experience. The report highlighted the fundamental role that senior hospital staff play in championing changes to care provision. Source: University of Hertfordshire funded by Alzheimer's Society.
Improving hospital services for people with dementia

Improving acute care for people with dementia
This report explores improvements in acute care resulting from the two earlier Scottish dementia strategies. It gives a snapshot of a wide range of activities. Key priorities include developing leadership structures through including Dementia Nurse Consultants on health boards, involving families as key partners and maintaining a culture of continuous improvement. Source: Healthcare Improvement Scotland.
Improving acute care
See also:
 National Audit of Dementia Care in General Hospitals (UK)
Evaluation of the Scottish 8 Pillar Home Support Model
The 8 Pillars home-based support model for people with dementia was developed by Alzheimer Scotland. The model recognises the importance of community support and networks to provide an integrated approach to improving the resilience and independence of people with dementia and their carers, enabling them to live in the community for as long as possible. This evaluation focused on the model’s overall effectiveness in helping people to live independently.  The role of the Dementia Practice Co-ordinator, and the importance of having co-ordinated support, were especially valued by carers. Source: Scottish Government.
 Evaluation of the Scottish 8 Pillar Home Support Model

Dementia-Friendly Societies
Dementia Friendly Communities: Global Developments
This is the second edition of ADI's publication. It describes a wide variety of initiatives from every continent, including a section on New Zealand (pg. 17-18). This highlights a number of developments promoted by Alzheimers New Zealand and regional organisations, and the development of Rotorua as a dementia-friendly city. Source: Alzheimer's Disease International.
Dementia Friendly Communities: Global Developments
Dementia Friendly Communities: Key Principles
This sister publication sets out the principles and resources available to guide the development of dementia-friendly communities. This marks a fundamental shift from meeting physical and health needs of a person with dementia to supporting the person to achieve the best quality of life possible. It includes principles for people, communities, organisations, partnerships and programme management.
Dementia-Friendly Communities: Key Principles
Adopt a Care Home pilot scheme
The Adopt a Care Home pilot scheme aims to teach schoolchildren about dementia and link them with people living with dementia in a local care home. An evaluation found that the scheme was successfully implemented, increased children's dementia awareness and appeared enjoyable for most participants. This shows the scheme has potential to contribute towards dementia-friendly communities by increasing children's knowledge and understanding of dementia. Source: University of Sheffield.
Adopt a Care Home Scheme
See also:
Rotorua pre-school and rest home initiative (media report)
Incorporating dementia and age-friendly communities
Age-friendly and dementia-friendly communities do not wholly encompass each other. Age-friendly alone may overlook some of the specific needs of people living with dementia, while dementia-friendly communities often don’t consider the broader spectrum of needs among older adults as a whole. This report addresses how the two concepts can be incorporated.
Better together.  Integrating dementia and age-friendly communities
Dementia-friendly Toilets
Public toilets often have poor design and signage. This can preclude their independent use for people living with dementia. The absence of simple and clear way-out signs reduces any positive influence of even an otherwise well designed toilet facility.  This brief letter argues for effective intervention, such as putting up clear exit signs, and notes this would benefit everyone, not just those with dementia. Source: Lancet.
Dementia-friendly Toilets
See also:
Toilet Problems and continence (Alzheimer’s Society UK)

Information technology for people with dementia

Dementia-friendly Technology Charter
Alzheimer’s Society (UK) has produced a Dementia-friendly Technology Charter that provides information about assistive technology and how it can help people with dementia and their carers. This useful website includes an introduction and links to the charter and a video. Source: Alzheimer’s Society.
Dementia-friendly technology charter
The use of assistive technology for people with dementia
This UK study explored the views and experiences of people with dementia, their family carers and general practitioners (GPs) on their knowledge and experience of finding out about and using assistive technology (AT).  The study concluded that people with dementia and their family carers appear to be mainly responsible for driving a gradual increase in both awareness and the use of AT in dementia care. It recommends GPs should be equipped with the relevant knowledge to ensure families living with dementia receive appropriate information and support to enable them to live independently for as long as possible. Source: BMJ Open Journals.
Views on Assistive Technology

Arts activities for people with dementia  

“Artful Moments” an arts-based intervention
This study describes an arts-based initiative for people with dementia exhibiting behavioural problems, and their carer partners.  Artful Moments combined art appreciation and hands-on art-making activities over 27 two-hour sessions. The study showed that art-based activities were useful to engage with people with dementia.  Factors that encouraged participation included the participation of care partners, opportunities to share opinions and group activities.  Source: Canadian Geriatrics Journal.
Artful Moments
See also:
Artful Moments in Hamilton (YouTube)

Music, singing and wellbeing in people with dementia
This briefing paper draws on evidence about how music and singing interventions can improve the wellbeing of people with dementia and other diagnosed conditions.  It focuses on self-reported measures of quality of life; life satisfaction; and anxiety or depression. Source: What Works Centre for Wellbeing.
Policy Briefing on music and dementia
See also:
The Biker who sings to people with dementia (TV clip)
International papers
Facts and Figures 2017 USA
Alzheimers Association (USA) have released a summary of their annual report on prevalence and costs of dementia in the USA.  This include prevalence and incidence, costs and the numbers and experience of caregivers and other new research. Source: Alzheimer’s Association.
Facts and Figures USA 2017
See also
Full report

 [SL1]Practical ?
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